Precision medicine treatment update for advanced NSCLC (Dec 2016)

If you have been diagnosed with advanced non-small cell lung cancer (NSCLC), please read this blog post.  It could buy you months or years of good living.  Lung cancer treatments are advancing so fast that your cancer doctor may not know this information–even if they are at a major academic cancer center.

Scientific evidence is accumulating that genomic testing and targeted therapies for cancer patients who have advanced non-small cell lung cancer make a significant difference in outcomes.  By “significant difference,” I mean a year or more of survival with good quality of life.  Genomic testing and a targeted therapy have given me no evidence of disease for four years despite my metastatic lung cancer.  Now THAT’s is a significant difference!

Genomic testing looks at the cancer cells DNA for alterations in certain genes that may be driving the cell to act like cancer.  FDA-approved drugs are available that can target some of these driver genes (EGFR, ALK, and ROS1) and inhibit the cancer–these drugs are called “targeted therapy.”  Targeted therapy for other driver genes are available through clinical trials.  These drugs do not cure, but they are usually more effective and more tolerable than chemo.  Not every NSCLC cancer will have a driver gene, and not every driver gene has an effective treatment.  However, it’s worth investigating, because about 60% of NSCLC adenocarcinoma patients likely DO have a driver gene that can be targeted with an approved or experimental drug (per the LCMC II study).

Guidelines from the College of American Pathologists (CAP), the International Association for the Study of Lung Cancer (IASLC), and the Association of Molecular Pathologists (AMP) recommend analyzing either the primary NSCLC cancer tumor or a metastatic tumor for EGFR and ALK, regardless of patient characteristics (such as age, race, or smoking history). The National Comprehensive Cancer Network guidelines for metastatic non-small cell lung cancer strongly recommend testing for alterations in EGFR, ALK, and ROS1 genes, as well a broader genomic panel to look for driver genes that might have clinical trials available.

A recent article is a great reference on this subject for both physicians and for patients who want to learn more about their options.  It discusses evidence-based molecular testing options, driver genes, and available targeted therapy options, including off-label use of FDA-approved drugs for patients whose cancer mutation does not yet have an approved treatment. It also provides references to professional society guidelines and key journal articles.  The authors are Lecia V Sequist, MD, MPH (Associate Professor of Medicine, Harvard Medical School–an EGFR superdocs and a member of LUNGevity’s Scientific Advisory Board) and Joel W Neal, MD, PhD (Assistant Professor of Medicine–Oncology, Stanford University/ Stanford Cancer Institute).

Those of you with advanced NSCLC might want to share the article with your cancer doctor.

Personalized, genotype-directed therapy for advanced non-small cell lung cancer by Lecia V Sequist, MD, MPH, and Joel W Neal, MD, PhD

Research and new treatments are moving faster than most cancer physicians can track.  Patients with advanced NSCLC can increase their chances of survival if they learn more about their disease.  I hope this blog helps you do that.

#LCSM Chat Topic 10/23: How can we help new stage IV #lungcancer patients consider 2nd opinions, mutation testing and clinical trials?

The following post is reblogged with permission from today’s #LCSM Chat blog.


Most patients experience a period of stunned disbelief or shock when they hear a diagnosis of “metastatic lung cancer.”  For those who are offered treatment options, the first few months revolve around medical appointments.  Others may only be told to go home and get their affairs in order.  Patients and family members may be in denial, or trying to process what all those dismal survival statistics mean for their future. It might be the first time the patient or a family member has had to confront the possibility of death for themselves or a loved one.

Some patients (or their caregivers) may be empowered, engaged and researching options, but many don’t have the physical or emotional energy to do so.  At this point, few patients are thinking about second opinions, mutation testing, or clinical trials.

The problem with waiting for metastatic lung cancer patients to become empowered and engaged is that the majority won’t live a year if they can’t access the newest treatment options. However, if they get educated about their options, consult with a knowledgeable oncologist, and are eligible for newer treatments or clinical trials, their lifespan may be years longer.

You might ask, how could this be true?

The landscape of personalized medicine and new lung cancer treatments is changing fast, and more stage IV lung cancer patients are living longer.  Unfortunately, due to the pace of that change, not all healthcare providers who treat lung cancer are current on the newest treatment options. Some oncologists do not test their patients’ adenocarcinoma lung cancer tumors for EGFR or ALK, even though NCCN and other respected guidelines recommend it.  Even research oncologists at NCCN facilities can’t track every new clinical trial for lung cancer.  And, sadly, some healthcare providers simply believe that because metastatic lung cancer is not curable, there’s no point in treating it.

The fact is, most metastatic lung cancer patients (or their trusted caregivers) will need to become engaged and empowered if the patients want a better chance at survival.  Many will need help to do this, either online or offline.

The #LCSM Chat on October 23 will explore how the lung cancer community might help metastatic lung cancer patients become interested in and knowledgeable about second opinions, mutation testing, and clinical trials. Your moderator Janet Freeman-Daily (@JFreemanDaily), a stage IV lung cancer patient who currently has No Evidence of Disease in a clinical trial, will offer the following topics for discussion:

T1:  How can we help a stage IV lung cancer patient understand the need for 2nd opinion when their doctor offers no treatment?

T2:  How can we help a stage IV adeno lung cancer patient consider EGFR & ALK mutation testing if their doctor has not done it?

T3:  How can we help a stage IV lung cancer patient consider targeted therapy clinical trials if they have a targetable mutation?

We look forward to seeing you in the chat! To participate in the chat, remember to include #LCSM in all your tweets, or use a tweetchat tool like with that hashtag (more on that here).